Josh saw Dr. M on Friday. His glaucoma and vision is stable, no changes. Praise God!
But his right eye continues to do an upsweep when he looks to the left. Dr. M started to look through Josh's chart to review his previous eye muscle surgeries, but realized that he only had chart II, not chart I. Josh's chart is so thick that it had to be divided into two volumes! Dr. M said he needed to go to the archives to get the other volume, and would take some time to review it.
We had a different ped ophth for a very short time, a couple years ago, who was closer to where we live, but he was not experienced with children with PHPV, so we went back to Dr. M. Unfortunately, we allowed this other doctor to do an eye muscle surgery on Josh. Dr. M had to fix the damage to Josh's eye, as well as correct the problem the other doctor was supposed to have fixed.
Depending on what this other doctor did, will affect if Josh's current eye muscle problem can be fixed.
Waiting is not an easy thing for me. But I am now waiting for Dr. M to call me to tell me if Josh's eye muscle problem is fixable, or if he will just have to learn to live with it. It is dificult for me to know how to pray in this instance. I want Josh to have optimal vision, and that would mean being able to fix this eye muscle issue. But I dread more surgery, I dread more anesthesia, I dread seeing my little guy once again suffer post-op pain.
Sunday, December 4, 2011
Monday, November 7, 2011
Homeschooling Update
Life has been busy here in the shoe. We have been plugging away with our homeschooling. My days are full with homeschooling seven children!
Jesse, my second grader, is doing well with reading. He eagerly brings books to read to me. Math is another story. It is more work for him. He would rather do the things that come easy, and skip those things that take time and effort. Pretty typical for all of us!
Josh, my first grader, who has the eye problems, is doing well, too. He is my only south paw, and that has been interesting. He is reading well, and sometimes thinks he is in a competition with Jesse. Some days he cries because Jesse is ahead of him.
Seth is my fourth grader. He is doing well, is really beginning to bloom as a student. He likes to work outside with his daddy on the weekends, and enjoys seeing how things work. And he LOVES dinosaurs!
Aaron is doing well with his school work, after his big ordeal last summer. He still creates ways to get out of work, so I would say he is back to his former self:)
Sarah is a freshman this year. She is enjoying being a bit more independent with her work. She has a heart for learning and desires to be a speech and language pathologist someday. She is in the process of starting her own ministry. She is selling handknitted hats and other items, to raise money for more yarn. With the yarn she buys, she is knitting hats to send to an orphanage in eastern Europe. She hopes to someday go and work with the children there, but for now, she sends them her love in the form of hats.
(The items she sells are mostly made of handspun wool, which is not good for donating to places where handwashing would not be an option. The would quickly end up with unusable hats. Thus, the selling of items to buy yarn.)
Bethany is a junior this year. She is one of my artsy ones and is working toward an arts honor diploma. She is getting quite good with her drawing. She also enjoys knitting, but is not driven the way her sister is. Bethany is learning to drive, which has proved to be quite interesting for her dad!
Christopher is my preschooler. We are doing a K4 program that is especially for children with T21. We just started this level and are working on getting a feel for the program, and getting organized. Currently, he is learning more sight words, and attempting to put them together to form very simple sentences. He is learning to match the names of himself and family members to their pictures. He enjoys this. We then use the names with the sight words in sentences. I have noticed this helps Christopher attempt to say words he otherwise would not. He is able to say his own name now! Well, the nickname we call him: Topher. I love the joy he has when he has accomplished something new!
In math, Christopher is working with learning his colors. We are doing all sorts of "red" things now. Red hearts, red ladybugs, red playdough, finding red clothing in story books. He is counting to 5 and stacking blocks, and doing sequencing with the blocks.
His muscle tone in his hands is quite low, so we are squeezing putty balls, and poking playdough to help strengthen and give better control. Holding crayons and pencils can be a challenge to little hands that have low muscle tone.
Trinity is my little toddler girl. She is busy playing and developing her speech and other skills. When we work with Topher with his speech, she is by his side, saying all the words we are trying to get him to say. They laugh together and fight together. She has passed him in speech, which we knew would happen. In many ways, they are like having twins, they are so close in development right now. I know this will change, as Trinity speeds into the next stage, and Christopher enjoys taking his time and savors the moments.
Jesse, my second grader, is doing well with reading. He eagerly brings books to read to me. Math is another story. It is more work for him. He would rather do the things that come easy, and skip those things that take time and effort. Pretty typical for all of us!
Josh, my first grader, who has the eye problems, is doing well, too. He is my only south paw, and that has been interesting. He is reading well, and sometimes thinks he is in a competition with Jesse. Some days he cries because Jesse is ahead of him.
Seth is my fourth grader. He is doing well, is really beginning to bloom as a student. He likes to work outside with his daddy on the weekends, and enjoys seeing how things work. And he LOVES dinosaurs!
Aaron is doing well with his school work, after his big ordeal last summer. He still creates ways to get out of work, so I would say he is back to his former self:)
Sarah is a freshman this year. She is enjoying being a bit more independent with her work. She has a heart for learning and desires to be a speech and language pathologist someday. She is in the process of starting her own ministry. She is selling handknitted hats and other items, to raise money for more yarn. With the yarn she buys, she is knitting hats to send to an orphanage in eastern Europe. She hopes to someday go and work with the children there, but for now, she sends them her love in the form of hats.
(The items she sells are mostly made of handspun wool, which is not good for donating to places where handwashing would not be an option. The would quickly end up with unusable hats. Thus, the selling of items to buy yarn.)
Bethany is a junior this year. She is one of my artsy ones and is working toward an arts honor diploma. She is getting quite good with her drawing. She also enjoys knitting, but is not driven the way her sister is. Bethany is learning to drive, which has proved to be quite interesting for her dad!
Christopher is my preschooler. We are doing a K4 program that is especially for children with T21. We just started this level and are working on getting a feel for the program, and getting organized. Currently, he is learning more sight words, and attempting to put them together to form very simple sentences. He is learning to match the names of himself and family members to their pictures. He enjoys this. We then use the names with the sight words in sentences. I have noticed this helps Christopher attempt to say words he otherwise would not. He is able to say his own name now! Well, the nickname we call him: Topher. I love the joy he has when he has accomplished something new!
In math, Christopher is working with learning his colors. We are doing all sorts of "red" things now. Red hearts, red ladybugs, red playdough, finding red clothing in story books. He is counting to 5 and stacking blocks, and doing sequencing with the blocks.
His muscle tone in his hands is quite low, so we are squeezing putty balls, and poking playdough to help strengthen and give better control. Holding crayons and pencils can be a challenge to little hands that have low muscle tone.
Trinity is my little toddler girl. She is busy playing and developing her speech and other skills. When we work with Topher with his speech, she is by his side, saying all the words we are trying to get him to say. They laugh together and fight together. She has passed him in speech, which we knew would happen. In many ways, they are like having twins, they are so close in development right now. I know this will change, as Trinity speeds into the next stage, and Christopher enjoys taking his time and savors the moments.
Thursday, October 13, 2011
Canning Day
My oldest daughter, Crystal, came over on Tuesday. We canned 22 quarts of applesauce. Crystal made cranberry sauce, too. That is the pretty red jars.
So much fun!
We plan to make some applebutter and more sauce next week.
Plastic Surgeon Appointment
Aaron saw the plastic surgeon at the wound center yesterday. He said Aaron has a keloid at his wound. This basically scar tissue that has gone crazy.
The plan is to have Aaron apply moiturizer, such as cocoa butter or olive oil, to soften and hopefully flatten the area a bit. He is also to stay off the area as much as possible. If it continues to bother him, there is the possibility of removing some of the excess scar tissue. Otherwise, they prefer to leave it alone.
I am having Aaron massage coconut oil on the area a couple times a day. Coconut oil is a good moisturizer and very healthy for the skin. Smells good, too:)
The plan is to have Aaron apply moiturizer, such as cocoa butter or olive oil, to soften and hopefully flatten the area a bit. He is also to stay off the area as much as possible. If it continues to bother him, there is the possibility of removing some of the excess scar tissue. Otherwise, they prefer to leave it alone.
I am having Aaron massage coconut oil on the area a couple times a day. Coconut oil is a good moisturizer and very healthy for the skin. Smells good, too:)
Friday, October 7, 2011
Oysters on a Half Shell
I was at the grocery store on Tuesday, when my cell phone rang. It was Allura, my 19yo daughter. She asked me if I could come get her at work. When I asked her why, she said she had sent me a text, hadn't I read it? No, I don't always feel my cell phone vibrate to alert me of text messages.
Allura was having an allergic reaction. She had eaten a sample cup of oyster soup at work. Allura is very allergic to shell fish, but she said she did not know oysters are shell fish! Currently, she is working in the food industry, so I would have thought she would know that oysters are shell fish! She has had reactions to crab, and to glucosamine and chondroitin, which comes from shell fish, in the past. When she consumes shell fish, her throat gets itchy, she gets short of breath, and her heart races and skips beats.
She was in her car, and wanted me to come get her. I tried to convince her to go back into the store and have one of her co-workers take her to the emergency room. She told me she would be fine, her friend, Miles, was coming to get her, he was only 10 minutes away. Later, she admitted she was too weak to walk, that is why she didn't go back in. If Miles was coming to get her, did she still want me to come? "yes, I need you to come, Mom". That scared me, my independent daughter!
The grocery store was about 45 minutes drive from Allura's place of work. I called her a couple times to see how she was. I instructed her to call me when Miles got there, and that he was to take her around the corner to the Urgent Care Center.
After about another 10 minutes and no return phone call, I called her again. This time, she was not answering the phone. I was in a panic. I envisioned her dying in her car, with no one there to help her! So, I called 911 and had them dispatch and ambulance. I continued to try to get her on her cell phone. After a few more attempts, she answered and said Miles was there, and was taking her to Urgent Care. I called 911 and had them cancel the ambulance. I heard later they ambulance had been circling the parkinglot looking for her car.
I was still a good 10-15 minutes away from Urgent Care. When I pulled into the parkinglot, Miles, whom I had never met, was nervously pacing the waitingroom, watching for us. He had such a look of relief when he saw the big blue van pull in. Allura agreed with me later, that he had been watching for us, and he admitted to being relieved when I showed up:)
The doctor had already given Allura a shot of prednisone in her butt, and a shot of benadryl in her upper arm. She was in the process of a nebulizer treatment when I walked in.
They kept her for a while afterward, to make sure she would not have a rebound reaction. When they discharged her, she was doing well, but still weak.
She came over for supper last evening, still not feeling well. She had not taken the oral steroid. The doctor told her she did not need to take it *if* she felt better. But she was not feeling better! Teenagers!! She was still short of breath and weak.
She got a lot of good natured teasing from the rest of the family about "not knowing oysters are shell fish"! She thought she just needed to avoid the crustations, not the ones on shells, like oysters and clams! We told her we think she should stick to land critters. She told me she had planned to have Miles just take her home, not to Urgent Care! Oh, my!
Allura is my independent girl. She likes to do things herself, not be spoiled and pampered. Likes to be just left alone when she is not feeling well. But she wanted her mom, she needed me. That is a good feeling. I will remember that the next time she is spurning my desire to baby her. I will secretly smile, knowing she still needs me to love her:) I could have done without the crisis though.
After the past few weeks, I think I need to see if they make industrial strength hair color! I doubt I have a hair on my head that still has natural color! Thankfully, Allura is a good hairdresser!
Allura was having an allergic reaction. She had eaten a sample cup of oyster soup at work. Allura is very allergic to shell fish, but she said she did not know oysters are shell fish! Currently, she is working in the food industry, so I would have thought she would know that oysters are shell fish! She has had reactions to crab, and to glucosamine and chondroitin, which comes from shell fish, in the past. When she consumes shell fish, her throat gets itchy, she gets short of breath, and her heart races and skips beats.
She was in her car, and wanted me to come get her. I tried to convince her to go back into the store and have one of her co-workers take her to the emergency room. She told me she would be fine, her friend, Miles, was coming to get her, he was only 10 minutes away. Later, she admitted she was too weak to walk, that is why she didn't go back in. If Miles was coming to get her, did she still want me to come? "yes, I need you to come, Mom". That scared me, my independent daughter!
The grocery store was about 45 minutes drive from Allura's place of work. I called her a couple times to see how she was. I instructed her to call me when Miles got there, and that he was to take her around the corner to the Urgent Care Center.
After about another 10 minutes and no return phone call, I called her again. This time, she was not answering the phone. I was in a panic. I envisioned her dying in her car, with no one there to help her! So, I called 911 and had them dispatch and ambulance. I continued to try to get her on her cell phone. After a few more attempts, she answered and said Miles was there, and was taking her to Urgent Care. I called 911 and had them cancel the ambulance. I heard later they ambulance had been circling the parkinglot looking for her car.
I was still a good 10-15 minutes away from Urgent Care. When I pulled into the parkinglot, Miles, whom I had never met, was nervously pacing the waitingroom, watching for us. He had such a look of relief when he saw the big blue van pull in. Allura agreed with me later, that he had been watching for us, and he admitted to being relieved when I showed up:)
The doctor had already given Allura a shot of prednisone in her butt, and a shot of benadryl in her upper arm. She was in the process of a nebulizer treatment when I walked in.
They kept her for a while afterward, to make sure she would not have a rebound reaction. When they discharged her, she was doing well, but still weak.
She came over for supper last evening, still not feeling well. She had not taken the oral steroid. The doctor told her she did not need to take it *if* she felt better. But she was not feeling better! Teenagers!! She was still short of breath and weak.
She got a lot of good natured teasing from the rest of the family about "not knowing oysters are shell fish"! She thought she just needed to avoid the crustations, not the ones on shells, like oysters and clams! We told her we think she should stick to land critters. She told me she had planned to have Miles just take her home, not to Urgent Care! Oh, my!
Allura is my independent girl. She likes to do things herself, not be spoiled and pampered. Likes to be just left alone when she is not feeling well. But she wanted her mom, she needed me. That is a good feeling. I will remember that the next time she is spurning my desire to baby her. I will secretly smile, knowing she still needs me to love her:) I could have done without the crisis though.
After the past few weeks, I think I need to see if they make industrial strength hair color! I doubt I have a hair on my head that still has natural color! Thankfully, Allura is a good hairdresser!
Insult to Injury, or Injury to Insult
Aaron came to me on Monday to ask me to look at the healed wound on his butt. This is the large pressure wound that was caused by the edge of the board the doctors had underneath him during the resuscitation in July. The last little bit of scab had finally healed about 2 weeks ago.
The area, about the size of my fist, had developed a raised, red area in the center, about 1 inch by 1/2 inch, painful and warm to the touch. I emailed our doctor right away, and he called a prescription over to our pharmacy, with instructions to start it imediately, in case it was MRSA.
By Tuesday it was looking worse, so I made an appointment to have it looked at by the doctor. He wanted me to keep an eye on it, and continue the medication.
Aaron was outside playing football last evening, with his brothers and sisters. He decided to try to tackle Bethany. Somehow, he managed to fall on one of the beams we have edging our parking area. He hit his butt, right across the tailbone area. He hit so hard that he was winded, and saw black spots, or as he called them, black blobs.
He got up this morning barely able to walk, and sitting caused him a lot of pain. I gave him ibuprofen and called our doctor. By the time we went in, the ibuprofen was working nicely. But I wanted the doctor to see his wound again, since it had some changes since earlier in the week. It has developed a red spot in the middle of the raised area, that looks thin and ready to break open.
The doctor agreed with my assessment, and has decided to send Aaron to a wound care specialist. He wants the plastic surgeon to have a look and decide if the wound needs opened up to remove any infected tissue, and if it needs some of the scar tissue removed. He said he has seen a lot of pressure sores, but has never seen one look like this after it has healed. We have an appt. next week. In the meantime, Aaron is to continue taking his antibiotic and ibuprofen. He is also to avoid rough housing and other activities that could cause more injury to the area.
The area, about the size of my fist, had developed a raised, red area in the center, about 1 inch by 1/2 inch, painful and warm to the touch. I emailed our doctor right away, and he called a prescription over to our pharmacy, with instructions to start it imediately, in case it was MRSA.
By Tuesday it was looking worse, so I made an appointment to have it looked at by the doctor. He wanted me to keep an eye on it, and continue the medication.
Aaron was outside playing football last evening, with his brothers and sisters. He decided to try to tackle Bethany. Somehow, he managed to fall on one of the beams we have edging our parking area. He hit his butt, right across the tailbone area. He hit so hard that he was winded, and saw black spots, or as he called them, black blobs.
He got up this morning barely able to walk, and sitting caused him a lot of pain. I gave him ibuprofen and called our doctor. By the time we went in, the ibuprofen was working nicely. But I wanted the doctor to see his wound again, since it had some changes since earlier in the week. It has developed a red spot in the middle of the raised area, that looks thin and ready to break open.
The doctor agreed with my assessment, and has decided to send Aaron to a wound care specialist. He wants the plastic surgeon to have a look and decide if the wound needs opened up to remove any infected tissue, and if it needs some of the scar tissue removed. He said he has seen a lot of pressure sores, but has never seen one look like this after it has healed. We have an appt. next week. In the meantime, Aaron is to continue taking his antibiotic and ibuprofen. He is also to avoid rough housing and other activities that could cause more injury to the area.
Tuesday, October 4, 2011
Constant Changes
When our second child left the shoe in August, we began discussing the sleeping arrangements in our household. We had an empty room, and needed to move some beds around.
Our plan was to move Bethany and Sarah into Allura's old room. It is slightly larger than the one they had been sharing, and it is one of the two bedrooms that has usable closets. And, we planned to move Trinity into the girls' room. But there was disagreement, so we put off the moving. The bedroom sat empty these many weeks. Well, not quite empty, Allura still had a lot of clothes in there, and the bed she slept in was there. The empty bed came in handy the nights our oldest came to stay. It was a blessing to be able to offer her a quiet place to rest.
Bethany did not want to move, and she did not want to stay in her current room alone. She enjoys being with others, and tends not to like change. So, Sarah moved over to Allura's old room alone. And Bethany chose to share her bedroom with Trinity.
Last night was the first time Trinity slept in her new bedroom. Until now, she had been in my bedroom, first in the bassinet, which she really did not sleep in, and then in the portacrib. We brought the real crib down from the attic over the weekend and put it together. We finally put sheets on it yesterday.
I went to bed, last night, for the first time in 2 1/2yrs, without my baby girl in the room with me. My calculations are not off, she will be 2yo in December, but before her birth, she was very much sleeping in the same room with me:) I was very torn about it, I laid awake for quite a while, listening for her, ready to run upstairs and bring herr back down with me. But she slept all night, is still sleeping peacefully at 9:30am.
So, it looks like my next project is to fold up the portacrib, and put it away, and rearrange my bedroom. Bethany is not the only one who has difficulty with change:(
Our plan was to move Bethany and Sarah into Allura's old room. It is slightly larger than the one they had been sharing, and it is one of the two bedrooms that has usable closets. And, we planned to move Trinity into the girls' room. But there was disagreement, so we put off the moving. The bedroom sat empty these many weeks. Well, not quite empty, Allura still had a lot of clothes in there, and the bed she slept in was there. The empty bed came in handy the nights our oldest came to stay. It was a blessing to be able to offer her a quiet place to rest.
Bethany did not want to move, and she did not want to stay in her current room alone. She enjoys being with others, and tends not to like change. So, Sarah moved over to Allura's old room alone. And Bethany chose to share her bedroom with Trinity.
Last night was the first time Trinity slept in her new bedroom. Until now, she had been in my bedroom, first in the bassinet, which she really did not sleep in, and then in the portacrib. We brought the real crib down from the attic over the weekend and put it together. We finally put sheets on it yesterday.
I went to bed, last night, for the first time in 2 1/2yrs, without my baby girl in the room with me. My calculations are not off, she will be 2yo in December, but before her birth, she was very much sleeping in the same room with me:) I was very torn about it, I laid awake for quite a while, listening for her, ready to run upstairs and bring herr back down with me. But she slept all night, is still sleeping peacefully at 9:30am.
So, it looks like my next project is to fold up the portacrib, and put it away, and rearrange my bedroom. Bethany is not the only one who has difficulty with change:(
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